Compassion & Choices is working to raise awareness about the option of voluntarily stopping eating and drinking for a decisionally-capable adult who would like to reduce the length of time they suffer from any terminal disease including progressive diseases such as dementia.
Why Does Compassion & Choices Support Voluntarily Stopping Eating and Drinking?
Many people struggle with the unrelieved suffering of a chronic or incurable and progressive disorder. Others may decide that they are simply “done” after eight or nine decades of a fully lived life. Free will and the ability to choose are cornerstones of maintaining one’s quality of life and dignity in their final days.
With significant caregiving and hospice support, a determined and well-informed individual can successfully choose the end-of-life option of voluntarily stopping eating or drinking, also known as VSED. VSED is when a mentally capable individual decides to control their own dying by making a conscious decision to refuse foods and fluids of any kind, including artificial nutrition and/or hydration, in order to advance the time of their death.
What Is the Process of Dying From VSED Like?
The exact process of dying from VSED unfolds in a unique way for each person and depends on physical, mental and emotional circumstances.
- In the first few days of the fast, some people may remain as active as before but many soon will become weak, fatigued and increasingly sleepy.
- Once they begin to feel light-headed and weak, movement requires assistance in order to prevent falls or accidents.
- Weakness or dizziness may occur suddenly, which is why 24-hour care is recommended once the fast begins.
- Mental alertness is replaced by longer and longer periods of sleeping. In many cases individuals eventually cannot be roused and remain in an unconscious or coma state.
- Some individuals have periods of alertness throughout the process up until death. The dehydration from VSED affects the kidneys and the heart, and the other organ systems in the body begin to shut down.
Death from VSED is a natural process. As death nears:
- Breathing becomes more shallow and irregular.
- Moaning or “rattling” breathing may occur, but is not believed to be an indication of pain or distress.
- The body may change temperature and there can be discoloration in the face (flushed red, or pale with bluish or yellowish tones), as well as purple or bluish mottling in the hands or feet.
How long does it take?
It is difficult to predict exactly when the end will come — this depends on the person’s:
- physical condition
- height and weight ratio
- fluid retention
- ability to remain completely free of all fluids, and
- perhaps a readiness to “let go.”
For a terminally ill person the process may take several days to several weeks after intake of food and water stops. Some people experience unconsciousness in as little as two to three days. For those without terminal illness the length of time to death tends to be longer.
Since the length of the process is unpredictable, planning ways to bring meaning, pleasure and comfort during this time may reduce anxiety about the length of the process. Dying patients may want to:
- Choose favorite movies, music, poetry, or passages to read or have read to them.
- Share memories or favorite stories with photo albums and scrapbooks for prompting.
- keep a journal in the form of written, video or audio notes for loved ones.
- Create some type of “legacy project” to leave behind for loved ones.
- Ask a caregiver to apply body lotion to keep the hands and skin hydrated or use gentle touch or massage to ease suffering.
Is there Anything that Can be Done to Speed Up the Dying Process?
Individuals and their loved ones who consider this option should understand the importance of stopping all fluids, including ice chips, once the fast has begun in order for death to occur within the shortest interval. Intake of even small amounts of food or water can prolong the dying process, but it is up to the patient to determine their own intake. Excellent oral care is important to ease the symptoms of dry mouth (see below).
How Does VSED Feel For the Dying Person?
Since VSED is a natural process of dying, individuals can have a range of symptoms and experiences. Unwanted symptoms can typically be managed with medications from the doctor or hospice.
Some people express a sense of peace that they can “stop fighting” and describe feeling euphoria or pleasant light-headedness. Researchers believe there is an analgesic effect caused by dehydration that may explain this response.
The most frequently reported adverse symptoms include:
- thirst or dry mouth
- occasional hunger
- feelings of uncertainty about the approach.
Some people may experience increased confusion, delirium or agitation during the process as the organs shut down and the chemicals in the body change. Again, these symptoms can typically be managed by the doctor or hospice.
How Can I Avoid Dry Mouth?
Providing oral care on a regular schedule can help ease symptoms of dry mouth. This includes using:
- lip salve, mouthwash, oral sprays and gels like Biotene, soft toothbrushes, glycerin swabs or sponge swab, and rinses with cool water or another beverage of choice (not to be swallowed).
- Coconut oil (the type used for cooking) can be soothing on the lips, gums and tongue.
- Vaseline or non-petroleum based lip balm can be used to keep the lips moist.
- A humidifier in the room.
- body lotions to hydrate the hands and skin.
Hospice can provide symptom management and can be consulted about additional resources and comfort measures.
How can I receive medications without fluids?
It is important to review all medications with a physician before beginning VSED. Your physician may recommend that you:
- avoid medications that may cause dry mouth or thirst.
- stopping some medications, such as those for heart disease or diabetes, may secondarily speed up the dying process without increasing discomfort.
- Take medications for pain, agitation, anxiety or other symptoms in forms that don’t require drinking fluids, such as sublingual drops, skin creams, skin patches or suppositories.
It may take healthcare providers some time to find the best medication or combination of medications to meet the individual’s needs. Many medications used at the end of life have a sedative property and cause drowsiness, which may lessen possible symptoms of discomfort in the VSED process.
I don’t like the idea of not drinking; can’t I just stop eating? Isn’t hydration important for comfort?
Dying from a lack of food alone can be prolonged and more uncomfortable than dying from dehydration. A person can live for a very long time without eating, but dehydration (lack of fluids) speeds up the process. Dehydration can contribute to comfort rather than increase suffering, by:
- reducing fluid overload in the body
- diminishing some of the respiratory distress of congestive heart failure and pulmonary edema.
- leading to less frequent episodes of coughing, choking and shortness of breath
How Should I Prepare for My VSED Decision?
Learn as much as you can about this process before beginning. Here are some general guidelines:
- You cannot do this alone. You will need 24-hour care during this process, and ongoing hospice care or oversight by your physician. Begin by discussing your end-of-life wishes and concerns with family, caregivers and your primary physician.
Talk to Your Provider
- Talk with your physician and/or hospice nurse to explain your end-of-life wishes, values and concerns. Be sure to describe your current condition and fears about further deterioration in your quality of life, and your desire for comfort care. If you are not currently on hospice you can discuss getting a referral to a supportive hospice from your doctor once you begin the fast and become eligible for this care benefit.
- If your illness is not likely to cause death within six months and you do not have a terminal prognosis, your medical providers may require you to be evaluated for depression and decision-making capacity before offering their support. A psychiatric evaluation is routinely done to rule out serious depression, dementia, severe anxiety or other mental conditions that could prevent an informed choice about your own end of life. If you are a senior citizen, ask your physician for the name of a psychologist or psychiatrist who specializes in geriatric evaluations.
- You can also talk with your doctor or hospice nurse about completing an Out of Hospital Do Not Resuscitate (DNR) order and / or Physician Orders for Life-Sustaining Treatment (POLST) form.
Talk with Your Caregivers
- Acknowledge to your caregivers that if you request nutrition or hydration, they are ethically bound to provide it. However, you can discuss how they might respond in a way that reminds you of your original intention. For example, “OK, I’d be happy to get you some milk, but I just want to remind you that you wanted to stop eating and drinking to control your dying. Do you still want that milk?”
- You may resume eating and drinking in the early stages of VSED, but later food and liquids can be taxing to your system, which has begun shutting down.
- Discuss with your caregivers and loved ones what would make this time meaningful for you (favorite music, poetry or literature; personal stories or memories; gentle massage or touch; etc.)
Get Your Paperwork in order
- Be sure your advance directive paperwork is up to date and expresses your specific wishes. You can find advance directive resources on Compassion & Choices’ website at www.compassionandchoices.org/end-of-life-planning/plan/advance-directives/
- Add a statement to your advance directive declaring your voluntary and informed decision to refuse all further oral intake with the understanding that doing so will permit you to control your dying. This document should be signed, dated and witnessed, just as your state requires other advance medical directives to be signed and witnessed.
- You may wish to write a letter or make a video in which you talk about your intentions to stop eating and drinking, and why you would like to control your death. This may be helpful in the event that your memory fails or cognitive changes impact a previously made decision.
- Be sure all your caregivers know who to call when death occurs. We encourage you and your support persons to speak with your hospice regarding what takes place when death occurs. You do not need to call 911 if you are in the care of hospice or have a doctor identified who is willing to sign the death certificate.
- Complete all your business/financial tasks, and make funeral or memorial plans.
Talk to your Care Facility
- If you reside in a care facility, discuss your wishes with the nursing director or social worker. You will need their agreement to support you. You will need to make arrangements for 24- hour care once the VSED process has begun. Make sure each care provider understands and is supportive of your plan to stop all oral intake. Whether a family member or a paid caregiver, everyone caring for you must understand and support the fast.
Is VSED Protected by the Law?
The Supreme Court of the United States has affirmed the right of a decisionally-capable person (meaning a person not suffering from an illness that would prevent informed decision making) to refuse any unwanted treatment including food or fluids, even if that refusal will result in death. This includes individuals who do not have a terminal illness.
For a person planning to do VSED it can be helpful to:
- Write down your wishes to not receive nutrition and hydration and attach them to your advance directive.
- Video tape yourself making it clear that you do not want nutrition and hydration
- Receive a psychiatric evaluation for decisional capacity and to rule out depression or other conditions that may affect decision-making capacity (if the person is not terminally ill).
If the individual reconsiders their decision and decides to resume eating or drinking after starting VSED, caregivers must honor that choice.
What obstacles might I face?
Even though the U.S. Supreme Court has affirmed the right of a decisionally-capable individual to refuse food and fluids, not everyone is understanding and supportive of this choice. Many factors may impact your ability to get support with this decision, including your:
- physical condition
- disease progression
- living arrangements, and
- type of care facility you are in (e.g. secular versus religious)
- geographic location.
Support is necessary, as you cannot safely do this alone so it will be important to have the support of a caregiver and providers.
Tools and Resources
- Everything You Wanted to Know About VSED But Were Afraid to Ask (compassionandchoices.org)
- Choosing to Die: A Personal Story, by Phyllis Shacter — This is perhaps the first personal story ever written about the choice and experience of voluntarily stopping eating and drinking.
- Journal of My Mother's Death, a VSED Chronicle, by Marcia Sloane — C&C Storyteller Marcia Sloane details her mother's experience choosing to VSED after a long and happy life.
- Voluntarily Stopping Eating and Drinking, by Timothy E. Quill, Paul T. Menzel, Thaddeus Pope and Judith Schwarz — Describes the practice and explores the clinical, ethical, legal and policy questions that arise from the option.